From data to From data to actionaction::Developing & disseminating key Developing & disseminating key

indicators from the 2003 National indicators from the 2003 National Survey of Children’s HealthSurvey of Children’s Health

Centers for Disease Control and Prevention National Center for Health Statistics

Kathleen S. O’ConnorKathleen S. O’ConnorChristina D. BethellChristina D. Bethell

Stephen J. BlumbergStephen J. Blumberg

June 27, 2007June 27, 2007Inaugural Conference of the Inaugural Conference of the

International Society for International Society for Child Health IndicatorsChild Health Indicators

Chicago, IL - June 26 - 28, 2007Chicago, IL - June 26 - 28, 2007

Overview

(Selected) efforts to publish child health indicators General (selected) measurement issues to consider The 2003 National Survey of Children’s Health

(NSCH) model for key indicator development & dissemination Survey methods Expert panel review Indicator development & decision-making Indicator dissemination

Data Resource Center (DRC) on Child and Adolescent Health (www.childhealthdata.org)

(Selected) efforts to publish child health & well-being indicators

Kids Count ChildTrends Data Bank Index of Child & Youth Well-Being National Longitudinal Study of Adolescent

Health Youth Risk Behavior Surveillance System American Community Survey National Survey of America’s Families

Measurement issues

Increasing demand for child health and well-being data, especially at the sub-national level

Lack of data: states & local areas Small cell sizes: limited utility for subgroup

analyses depending on research question When comparing the “same” child health

indicator from more than one survey: must compare question wording, construct definition, data collection date, length of referent period, et cetera

Measurement issues (2)

If examining trend data: If estimates from two iterations of the same

survey vary, has the population itself changed over time? Or could it be due to (for example) minor changes in question wording? What if this has policy implications?

Should these data be ‘standardized’ before running trend analyses?

Are two data points a ‘trend’ or a ‘comparison’? Do data users want this much detail - will a non-

researcher care?

Measurement issues (3)*(*adapted in part from McGlynn, Health Affairs 1997 16: 7-21).

Various stakeholders may perceive a key health concept differently (examples: definitions of disability, health care quality)

Challenges: Identify & balance differing perspectives among

stakeholders Define accountability & framework Establish judgment criteria Identify reporting requirements Develop information systems to support

reporting requirements

NSCH, 2003 Goal:

produce uniform, comparable national & state estimates on health & well-being for children, families & communities

Sponsor: Health Resources and Services Administration (HRSA), Maternal and Child Health Bureau (MCHB)

Conducted by: CDC’s National Center for Health Statistics (NCHS), State and Local Area Integrated Telephone Survey (SLAITS) Sampling frame of the National Immunization Survey (NIS) Gain in efficiency, reduced survey cost

NSCH, 2003

Survey yields over 100 indicators of child health & well-being in the following areas::

Child’s HEALTH STATUS - physical, emotional, dental, CSHCN Screener

Child’s HEALTH CARE – including medical home

Child’s SCHOOL & ACTIVITIES Child’s FAMILY – including maternal health status

Child & Family’s NEIGHBORHOOD

NSCH, 2003

Currently the largest representative national survey of health, well-being, & healthcare of youth < 18 years old at the national & state levels

Data collection repeated 2007 Parent/guardian respondent, household

(HH) survey N = 102,353 (~2,000 per state & DC) Microdata publicly released in 2005

Sample design

Broad cross-sectional multistage sampling design

Random-digit-dial (RDD) telephone survey of HH (screened ~1.9 million telephone lines to identify eligible HH)

One child in HH randomly selected Sampling weights adjusted for non-response

& non-coverage Weights permit national and state-level

estimation

Data utility: NSCH Multiple stakeholders

Title V MCHB performance objectives or ‘core outcomes’ for the general pediatric population; program evaluation

Main data source for a number of indicators re: the Title V block grant application & state MCH funding (

Researchers Policymakers Journalists

Interested in new data & trends Asks ‘How does this compare with __’ to gain an angle & perspective

Parents & advocates for children Ask ‘why’?, want to know practical uses of data Could support parental decision-making Provide consumers with basic information to understand & use health

care (access, utilization, etc.)

Use of expert panels: key indicator development, 2003 NSCH

Two expert panels convened by HRSA: National Expert Panel (NEP) Technical Expert Panel (TEP)

Third panel: Data Resource Center Advisory group (to be discussed)

NEP: identified key constructs that should be considered for inclusion

TEP: provided guidance on instrument & survey design

TEP = subset of NEP

Expert panels (2)

Provided guidance Reviewed instrument drafts Developed strategies & criteria to evaluate

proposed methods & questions Provided connections to relevant research;

identified gaps in knowledge Advanced progress of the survey design

process Represented broad-based, meaningful

constituency involvement

Expert panels (3)

Range of specialties: practitioners, researchers, survey methodologists, parent advocates, pediatricians, Federal staff from two agencies

Successfully achieved wide representation of collective perspectives & experiences

Breadth & depth of competence that matched evaluative objectives (i.e., key indicators to be developed)

Highly collaborative & collegial process

Expert panels (4)

Process fulfilled Federal need to manage agency research, evaluation & dissemination efforts to improve pediatric health care for all children

Dimensions:

timing: NEP mostly involved in early & very end stages; TEP highly involved throughout

involvement: TEP offered numerous structured & unstructured opportunities for input (FTF, conf calls; NEP primarily FTF)

Expert panels (5)

TEP offered prioritized recommendations for sponsor decisions

Final decisions rested with HRSA/MCHB Dimensions

Indicator dissemination

Four chartbooks published by HRSA/MCHB with national & state-level indicators for youth & families General health, well-being Overweight Rural health Oral health

Special edition of Pediatrics solely dedicated to NSCH findings

Volume of manuscripts & posters indicate high level of knowledge production

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““Build it and they will come…”Build it and they will come…”

Developed and led by CAHMI -- Child and Adolescent Health Measurement Initiative based at the Oregon Health & Science University in Portland OR

•A third group of experts (National Advisory Group) provides ongoing guidance & approves of development of standardized indicators (some overlap of personnel with TEP)

Sponsored by HRSA/MCHB

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www.childhealthdata.org

Data Resource Center on Child & Data Resource Center on Child & Adolescent Health (DRC) Adolescent Health (DRC)

• Hands-on, centralized, user-friendly access to data

National Survey of Children with Special Health Care Needs (NS-CSHCN)

National Survey of Children’s Health (NSCH)

• Resources & information about data Examples of how other state & family leaders use

these findings, background about the national surveys, resources about health of children

InteractiveInteractive data resource centerdata resource center

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Available data output

Multiple indicator state profile tables Single indicator “all states” comparison tables Data graphs and tables for every indicator

Comparing an indicator across any two geographic areas and

Comparing indicators across subgroups of children by age, race, insurance status, income, family structure, health status, etc.

Education “Real time” technical assistance to understand,

interpret & use data Online workshops Opportunities to partner with other stakeholders to

discuss, interpret & act on findings

DRCDRC

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Educate policymakersEducate policymakers Key policy issues for your state Programs needs for information Child health needs

AdvocacyAdvocacy Pressure points in program budgets, priorities Effective methods to present a case Use of data in Fact Sheets, testimony, the media,

to strengthen family stories

Grant writingGrant writing Use of data to strengthen proposal

DRC useDRC use

Kristin Grimm, Spitfire Strategies

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DRC website DRC website www.childhealthdata.org

umbrella site for national SLAITS survey dataumbrella site for national SLAITS survey data

Nat. Survey of Children’s Health

HOMEPAGE

www.nschdata.org

Data Resource Center for Child & Adolescent Health

www.childhealthdata.org

Nat. Survey of Children w/ Special Health

Care NeedsHOMEPAGE

www.cshcndata.org

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Example of multiple indicator state profileExample of multiple indicator state profile

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Example of single indicator “all state” comparison table (option to sort by rank)

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Example of single indicator data table comparing two geographic areas

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Example of single indicator graph comparing two geographic areas

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Example of single indicator graph comparing two geographic areas and three subgroups of children (by type of health insurance)

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Examples of available informationExamples of available information

SELECT

● GEOGRAPHIC AREA

● TOPIC to search

SELECT

● QUESTION within topic area

COMPARE SUBGROUPS

to view question results by age, gender, race, type of special

need, etc.

Data Search“RECIPE”

STEP 1

STEP 2

STEP 3

COMPARE results with other

STATES

OPTIONAL

COMPARE results with other

STATES

OPTIONAL

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How “Action for Children North Carolina” used data from the DRC

1. Basis for an issue brief Outcomes by Income: low-income children fare worse on

many indicators2. Strengthen relationships with media

Sent the findings out to North Carolina’s Hispanic news outlets and others

Putting data into actionPutting data into action

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Data from the DRC allowed AFC to look at health, early care & education outcomes for children by income

•First time AFC could do this for a large number of indicators•Good opportunity to provide recent comparable findings on health insurance & child care subsidies

Basis for an issue brief

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Strengthen relationships with local mediaStrengthen relationships with local media

AFC is now the ‘go-to’ source for information about children in NC

Great source of data by race (a frequent media request)

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Other ways ACF used the data

Various presentations

Created a ‘Positive Indicators’ section in their biennial North Carolina Children’s Index report; variables included:

• read to daily by a family member• attends religious services• parent feels neighborhood is safe

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At the population level, this estimate translates into over 1 million children in Texas without health insurance of

any type at the time of the survey

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Click BLUE TEXT

Take home messages

Significant investments (time, effort, money, et cetera) have been expended to collect these data

Valuable source of key child health & well-being, family & community indicators

The 2003 NSCH model demonstrates a successful indicator development & dissemination process that may be applicable to your situation

Thanks!

Kathleen S. O’Connor, MPH koconnor1@cdc.gov

CDC, NCHS slaits@cdc.gov

Hyattsville, MD

Christina Bethell, PhD, MPH, MBA bethellc@ohsu.eduDirector, the Child & Adolescent Health

Measurement Initiative (CAHMI)Portland, OR

Stephen Blumberg , Ph.D. sblumberg@cdc.gov

CDC, NCHS slaits@cdc.gov

Hyattsville, MD